Kristin

Hello Judi:

You are I are living the exact same lives, and it would be wonderful to compare notes. My mom recently went through a ‘flare’ and is still having issues.

Would it be possible to chat with you on the phone? I’ll send you a friend request, if you accept, I’ll send along my phone number…

Kristin

Robert,

Thanks for the reply.

Live in MetroWest, corner of 495 and the Pike.  If you’re ever in the area, please lmk!

Beth Israel is a great hospital.  Went there for a cardiac MRI – their tech is amazing, and doc’s spoke TO me, not DOWN to me.

MGH is a huge disappointment.  My mom’s pcp prescribed nitrofurantoin, which almost killed her, an…[Read more]

Thank you both!

Lots of information… Bill, #6 – that is a huge concern of mine… if the power goes out, and I just purchased a backup generator that should cover mom’s two concentrators.  As it stands, her poc goes to 6 pulse, and that’s just not enough. She has no tanks available.

Looking for a support group in Massachusetts on the…[Read more]

Hello everyone!

A few more oxygen questions for you all, as our pulmonologist is just dreadful.  Never responds to any of my questions!  And he practices at the second best hospital in the country (?) Just dreadful!

Nasal cannulas… I’ve been reading that basic nasal cannulas aren’t meant for a flow rate above 5 or 6 lpm (?)  Then what are yo…[Read more]

Thanks, Charlene.

Caring for a 93 year old, I simply don’t have time to search through every thread.

And thanks for the response.  The reason why I ask about Metformin, is because my mom was prescribed Nitrofurantoin in December of 2016, and I’m sure you know what happened.  She was in MGH for 5 days with pneumonia.  I was livid.  Now, I try to…[Read more]

Hi Jaime – thank you for responding.  Mom is on a low dose, only 250mg.  It seems that she has good days, and bad days with her fibrosis.  It’s like some days she requires more oxygen, and some days not so much.  Wondering if anyone else has had this happen?  I would definitely say that your IPF has been very good to you.  🙂  Again, thanks…[Read more]

Thanks, Ken.  I’ve been reading about studies online stating that Metformin somehow lessens/reverses ILD.  While I’m very skeptical based upon all the reading I’ve done that this disease is irreversible, it was giving me some home to cling to.

Virginia: I haven’t been able to discuss the validity of any of these studies with my mom’s p…[Read more]

@casey

Hello Karen:

Thank you so much for the suggestions with regard to dressing my mom, while she is wearing her oxygen.  It is a learning experience for us both.  I try to allow her to dress herself to give hear some sense of independence.  I like to do things myself, and my mom feels the same.  I rigged up a hook in the bathroom that con…[Read more]

Thank you to everyone for the suggestions. 🙂 I’m so happy that I found you all! It’s so hard going through this alone! We have an appointment with MGH Cardiology tomorrow. It’s tough because the symptoms of heart failure mimic those of the ild/fibrosis, and mom has RVSP/elevated RA pressure, from her echo of a few weeks ago.  With regard to…[Read more]